As we look forward to Thanksgiving, I find myself reflecting on some of the amazing things that have happened this year at the Foundation thanks to your support.
What comes to mind first is the Metastatic Breast Cancer Collateral Damage Project’s Two-Day Think Tank held just over a week ago. Participants described it as “transformative,” “powerful,” and “revolutionary.” Indeed, it was all those things and more to the people there.
Almost 60 people spent two long days inside a hotel in Santa Monica (while 80-degree sunshine and the beach beckoned to our east coasters!). They included our Advocate Task Force as well as provider-survivors (health care professionals who have also experienced a cancer diagnosis and treatment). Our research team, led by Dr. Annette Stanton, UCLA, and Dr. Jessica Clague DeHart, City of Hope, presented the analysis from the questionnaire released during the summer, which included many open text questions to allow people living with MBC to share their experiences in their own words. The data spanned more than 260 slides. The full group was broken into smaller working groups that met to discuss not only the data but approaches that could be implemented in the current health care delivery system to improve quality of life. As each group shared the important points of their discussions, overlapping themes began to emerge. including:
- No two MBC patients’ experiences are the same so we need to provide highly individualized care;
- While many people report that their medical teams are providing good care, the patients don’t spend their time with providers on quality of life issues, which are often of great importance to them;
- Younger women and those with fewer financial resources struggle more and have more challenges in managing their quality of life issues;
- Women who have children under the age of 18 living at home or who are not living in a partnered relationship have a harder time managing everything from their medical care to their finances.
What was “transformative” about this process was that a room full of provider-survivors listened – truly listened – to the patient advocates. Then, together, the advocates and the provider-survivors began to develop recommendations to address these very real needs.
The work of the MBC Collateral Damage Project is not over and I look forward to sharing the ongoing progress we make in the coming months.
These and other projects we have done this year, and that we will continue to work on next year, will improve the lives of so many people. We are grateful to have you as a partner and we thank you for your support.
Wishing you a happy and healthy Thanksgiving,
Heather Cooper Ortner